Super Booger or Brain Tumour?
I was shivering in my humbling hospital gown, a health care executive now reduced to brain tumour patient. After almost five hours, the doctor walked in, looking as tense and tired as I felt, and made no eye contact. Never glancing up from her file, she said tersely: “Read the chart.”
I pride myself on being a good patient. I’m a realist — it’s called a waiting room for a reason. But at that moment, I’d had enough. Politely, I answered, “No. First you have to introduce yourself, and I’ll introduce myself. We actually have to see each other. I don’t want to be your friend but we need to have some real connection. So let’s start over. My name is Judith John. I’ve just had emergency surgery to remove a blood clot which resulted from a hemorrhaging inoperable brain tumour. As a result, my optic nerves are damaged, and I’ve got double vision. I see two of you, but please give me one name.”
The doctor was surprised by my comments, apologized, and offered her name and a handshake. We started over.
Strange to think, just weeks before, I was grappling with important issues in health care — including the wise allocation of scarce resources — as part of the management team at a major Toronto teaching hospital. How many times did my colleagues and I sit in conference rooms, passionately deliberating on how to provide the best care? Our world was increasingly evidence-based, administrative-heavy and focused on the latest technology. We created countless measurement tools and sophisticated metrics of success as we aimed for excellent outcomes.
But as a patient, I longed for something much harder to quantify. I experienced a fragmented system that has become obsessed with process, data and measure - ment, and diminished the importance of relationships, communications and, ultimately, the individual. I real - ized that for a patient, one metric really matters: Treat me like a person. Not an array of symptoms, a chart or a number, but a person. Someone ill who is vulnera - ble and frightened; but not stupid, not shoved to the LUKE PAUW periphery. A patient who — as Christopher Hitchenswrote — feels “swamped with passivity and impotence: dissolving in powerlessness like a sugar lump in water.”
Everyone is just a moment away from needing health care that is humane as well as advanced. Certainly we are blessed to have access to our robust health system, and my actual care was wonderful: Strong bricks of knowl - edge, experience, skill. But the mortar between those bricks was uneven and often it cracked under pressure. Most of these problems came from poor communication — and I saw first-hand how that could undermine care and outcomes.
Practitioners can be dismissive explainaholics who listen to reply, not to understand, absorbed in technology rather than engagement, abrupt and impatient. Sometimes doctors feel like mythical creatures who approve orders remotely and rarely appear. The role of primary caregiver, knowl - edgeable about an individual’s circumstances and history, has been replaced for many patients by a conveyor belt of busy, pressured specialists geared to efficiency rather than personal connection. And because health care is essentially about the small moments, patients can easily be overwhelmed navigating the system, and alienated by the very people trying to help them. This is truly a lost opportunity: Patients can be powerful partners in their care.
“Patient-centred care” is a mantra in every health organization’s strategic plan, a plaque on countless hospital walls. Certainly progress — however glacial — is being made. But the rhetoric needs to match the reality. It starts by making every human interaction count. Paying real attention and offering genuine clinical empathy: Putting yourself in someone else’s shoes (or, in this case, hospital gown). My radiation specialist had enormous scientific expertise, but I remember most that he started a session by asking how plans were going for my daughter’s wedding. He acknowledged me as a person first and patient second — and was interested in both of us!
Patient-centred also means moving away from the high-tech low-touch model which is dispiriting and distancing. I once had an interaction with a doctor who was so riveted on MRI images of my brain that he never once glanced away from the screen until I asked if he might not want to take a look at me, the “packaging.” Certainly, healthcare is under siege and in massive transition, but solving our problems will depend on solid connections between individuals. High quality healthcare must be grounded in basic bonds of trust and communication. We need to ensure a greater sense of a community and continuity of care, centring on the patient with the disease and not just the disease. I hope that as clinicians embrace all the exciting new advances, they will remember their motivation to go into health care. Reconnect with the time when they chose this demanding, powerful and privileged calling. No matter how extraordinary our tools, thrilling our knowledge and daz - zling our progress, the secret of care of the patient is caring for the patient. The human relationship is the very heart of healing.
- Judith John